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VNS Wire Hurts
A MyEpilepsyTeam Member asked a question 💭

What should I do? When I lay down certain ways it hurts. 1,666 people got injured nerve. 575 people died. My phone call was ignored yesterday. 🤬

posted September 20, 2022 (edited)
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A MyEpilepsyTeam Member

Being a strong advocate for yourself is very important. Are you calling just to make and appointment to be seen, or are you trying to speak with your doctor now? I probably wouldn't call every 30 minutes, but I would at least call daily. All this kind of stuff is so stupid and makes our lives much harder. Grrrr.

posted September 22, 2022
A MyEpilepsyTeam Member

Alyssa219,
I don’t care how many times the Doctor(s) ignore my calls about seizures, I become a thorn in their side until they answer. I don’t have a VNS device, but if I did, I would be contacting them every 30 minutes/ hour, until I got answers. If it bothers you that bad go to the ER.
It’s your life that is on the line. Do what you have to do to make your voice heard. Write down everything you are experiencing and make copies. Make sure to write the Date and time and for how long. Don’t skip even the slightest pain. Bug the daylights out of them until they answer or call you back. Be firm but not overpowering, unless they give you reason. Don’t let them hang up on you until your satisfied with the answers in a way you can understand. Then get it in writing with signatures and Everything. Don’t let them talk you out of anything and don’t settle for less than the best answer.

DON’T forget to write your questions down that you have now and later. Keep reading about the VNS and ask all the questions you can if you don’t understand something. Your the boss of your body.

posted September 20, 2022 (edited)
A MyEpilepsyTeam Member

My VNS was fine. It could of been raising my voice kinda acting for my book.

posted September 30, 2022
A MyEpilepsyTeam Member

When your having a sezuire your suppose to lay on your side so u don't bite your tounge

posted September 23, 2022
A MyEpilepsyTeam Member

Alyssa, contact your neurologist ASAP. If he/she doesn't fix it right away, then get a new neurologist. Mine has never hurt me, but I've always been the size of an NFL lineman (up until this year---I've just lost over 130 pounds). I have a friend who is tiny and was one of the first people in the world to get a VNS. She is five feet tall and only weighs 98 pounds. But she and I are best friends. It may not be the wiring. The last time that I had a new one put in, the surgeon put it in incorrectly. I had him fired from Yale/New Haven Hospital for that. I went back the day after the surgery, in pain, and begged my neurologist to look at what the neurosurgeon did. She had a fit with him and had that guy fired on the spot. Now, because you're so small, there isn't much room for error. The problem is, more than likely, that your VNS was implanted incorrectly.

posted September 22, 2022
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